Thursday, November 29, 2012

Switching to Long-Acting Beta Blockers

(NOTE: I am not a doctor and do not intend to offer medical advice to
anyone since we are all different. In this post, I am just hoping to share my own experiences with
a medication that has helped me. You should talk to your doctor before
trying any treatment yourself to make sure it is appropriate for your
own particular circumstances.)

I made a change in my medications last week that has so far yielded great results and a definite improvement in my quality of life!

[For those who aren't regular readers of this blog:

First, go back and read this post on Orthostatic Intolerance (OI) if you don't know much about it or think it doesn't apply to you. Everyone with ME/CFS has some form of OI (difficulty maintaining a steady blood pressure and heart rate when upright, whether they go up or down or all over the place) which is caused by autonomic nervous system dysfunction. Check out my post on In-Office OI Testing if you want to get tested yourself.

So, almost two years ago, I started taking beta blockers to help treat my OI. They helped me immediately and since then, I have been able to be much more active - taking walks, using light weights, and even going to the grocery store, all without crashing later. My doctor started, in January 2011, by prescribing propranolol which is a short-acting beta blocker. She figured that would give me the best flexibility for adjusting the dose throughout the day. I settled into a pattern of taking 20 mg as soon as I woke up in the morning, another 20 mg after lunch, and occasionally, a third 20 mg dose after dinner, if I was going to be active or out in the evening.

But there were some problems. The biggest problem was that by the time I woke up in the morning, I had no beta blockers in me, so my POTS would be in full-on attack mode - just getting out of bed, brushing my teeth, and getting dressed would send my heart rate soaring up to 120, 130 or higher (in fact, my POTS may have been worse at that time, due to a rebound effect from going without them all night). I had to severely restrict activity in the first hour after I got up - couldn't shower or carry the laundry basket downstairs or anything else. I had to lie quietly on the couch and wait for the beta blockers to kick in. My friends like to take walks in the morning, and one of them works and needs to walk early, but I was here in the house, waiting for my heart rate to calm down.

Meanwhile, my son, who was barely able to get up of the couch for the past 18 months, started long-acting 24-hour beta blockers at the end of August. He started college a week later and is doing GREAT. He not only walks all over campus, he also plays Frisbee with his friends, has only missed 3 days' of classes all semester, and is even doing a workout video called Insanity (!) with his friends. Beta blockers weren't the only factor in his improvement, but they were one of the biggest causes of this miraculous change.

Finally, besides my son's experience, I heard that several other young friends of ours with ME/CFS were also much improved with long-acting beta blockers, most of them prescribed by Dr. Peter Rowe, who is one of the world's foremost experts on pediatric CFS and OI. He recommends taking a 24-hour beta blocker at bedtime; he says when taken that way, it will help improve sleep as well as overall functioning because random bouts of tachycardia disrupt sleep during the night for people with POTS.

So, given all this, I asked my doctor if I could switch to a long-acting beta blocker. She considered the ones my son takes and others that other patients of hers take, but decided the best thing for me was to stick with propanolol which - surprise to me! - comes in a long-acting variety also.

The first night I took it (60 mg), I woke up the next morning and put my heart rate monitor on immediately. Right out of bed, my heart rate was only in the 70's! I washed up, got dressed, and even carried a load of laundry downstairs, all the time with my heart rate varying between 70 and 90 - a huge improvement! However, during the morning, I noticed that my heart rate would suddenly jump up above my AT (about 103) - when loading the dryer, cooking, etc. I called my doctor and asked her if I needed a higher dose (I had encouraged her to start with the lowest dose available), but she told me to be patient and give it a week or so, that it would build up in my system and become more effective over time.

She was right! I have had a really good week and a half - so much better than my last two months. We spent the weekend up in Rochester, visiting my family for the holiday. Normally, those visits completely wipe me out, and I barely make it through each day. I did great last week! I actually enjoyed all the family gatherings for the first time in years because I felt so much better. And now, back at home, I have been taking walks, lifting weights, cooking, etc. I LOVE being able to get going in the morning without waiting for my meds to kick in. I can shower when I first get up! Woohoo! And I do think I am sleeping better, too.

I'm not saying beta blockers are a cure-all, but they have really allowed both my son and I to be more active, do more, and enjoy our lives more. Even better, we have both discovered there is a positive domino effect. Being able to exercise more improves muscle strength, cardiovascular health, and overall physical condition...which in turns helps us to feel even better and do even more!

A couple of tips to remember if you want to try beta blockers (or, really, any ME/CFS treatment):

There are dozens of different beta blockers out there, of several different types. Wikipedia has a long list of uses for beta blockers, with this warning: "Large differences exist in the pharmacology of agents within the class,
thus not all beta blockers are used for all indications listed below." It can take a lot of trial and error to find exactly the right one for you, so DON'T GIVE UP! If one doesn't work for you or has side effects, try another!

As with most meds for CFS, it is usually best to start at the lowest possible dose, then go up gradually, if you need more. With beta blockers in particular, one side effect is fatigue (yes, the exact thing we are trying to reduce!). So, if you feel worse on beta blockers, then your dose is almost certainly too high. Try reducing to the lowest dose possible, even cutting tablets in half or quarters if needed, especially if you are one of those people who always overreacts to meds. If even the lowest dose is too much, try a different beta blocker (see #1).

Beta blockers are commonly used to treat high blood pressure, so you might be concerned that taking them will lower your already too-low blood pressure. That hasn't been the case for me nor for my son (we both have NMH as well as POTS) or any others I've spoken with. In fact, my BP has been steadier on beta blockers, just as my heart rate has, and it has not gotten lower.

Beta blockers do not actually lower blood pressure, per se. They work by blocking certain hormones in the body that affect heart rate and blood pressure. The one I take, propranolol, is a non-selective beta blocker that blocks the action of both epinephrine and norepinephrine; others work differently. We know that people with ME/CFS have messed-up endocrine systems that don't release the right amounts of hormones at the right times (which contributes to everything from sleep dysfunction to emotional swings to autonomic nervous system dysfunction aka OI). Anything that helps to control and maintain steady levels of any hormones helps improve our symptoms, in our experience.

Did I mention...DON'T GIVE UP? It often takes many trials of many different meds and doses to get the effect of the beta blockers just right, so keep trying. My doctor was thrilled when I asked her if I could try beta blockers. She said, "that's an easy one to say yes to," because they have been used safely for decades for many types of conditions (as opposed to some of the new research I sometimes bring her!).

So, that has been our experience. I wanted to share my excitement with you, of being able to do more and feel better, in the hopes that perhaps it will help you, too.

Actually, studies put the number at over 97% so that is pretty much everyone with ME/CFS. It makes sense - endocrine dysfunction is an integral part of the complex CFS disorder, and if we can't control our hormones, then we can't control BP and HR.

And, yes, you are right - low blood volume is another major factor in OI - also part of autonomic nervous system dysfunction and also controlled by hormones in the endocrine system - so it all ties together.

I guess we must be looking at different studies. The consensus I found while looking into this said that "up to 97%" had some form of OI. So in some studies they could've found a much lower number.

Anyway, I'm glad they're helping you. I couldn't tolerate 'em years ago...they gave me disturbing heart palpitations, so am looking into building up my blood in other ways, and in the meantime, using more salt.

Its great to know that you managed to find something to help. I'm 18 and have had CFS for three years now, although I haven't been able to find anything to really help. I'm definitely going to be asking my doctor about this soon.

Also, I don't know if you've tried it, quickly going over your blog, it doesn't seem like it. But I've found that I completely crash after eating refined sugar, which might result from OI or from excess insulin. Right now I'm taking cinnamon pills to see if it has any effect.

Treating OI often dramatically improves symptoms, especially in young people like yourself.

And you might be interested in our Facebook group for teens with CFS:

http://www.facebook.com/groups/225903134138530/

Despite the name, it has members in their early 20's, too. Check it out and click the join button if you want to join - it is a private group where young people can talk about the challenges of living with ME/CFS and ways to help, too.

If your parents are interested, we also have a parents' group on Facebook:

This is great news. I'm so glad that Jamie is able to have a normal college experience. I keep my blood volume up by taking a lot of electrolytes - magnesium, potassium and sodium. The salt alone didn't do it for me. With sufficient blood volume, I benefit a lot from my beta blocker, which I take before bed. There are still some days or weeks when my heart acts up & I need to rest more, but these episodes aren't nearly as intense as they have been in the past.

So glad beta blockers are helping you, too! That has been Jamie's experience, too - he still has bad days but they aren't nearly AS bad and they are much rarer. He's taking just 3 classes each semester for right now, which leaves him time to rest when he needs to.

He takes Mg and K (potassium) too - Dr. Rowe recommends potassium supplements for anyone on Florinef, and he takes the Mg malate at bedtime to help with sleep and pain.

Almost thirteen years ago I contracted CFS and am now writing this comment in hope of helping others by sharing my experience in overcoming it. CFS began, for me, with almost an entire month in bed thinking at first I had a very persistent flu. It was significantly different from past flus in many ways, however. I had feverish nights where I thought I had “sweated” out the flu but when I got up the next day I didn’t feel better. After two weeks I went to a physician and he prescribed an intensive course of antibiotics. I took them but there was no improvement in my condition. After a month at home I had to return to work thinking I would just “tough” it out and the flu would eventually leave on its own. Things continued to be unusual with my condition. I mostly felt chilled to the bone even with a lot of clothing on. I was continually weak and noticed I couldn’t concentrate on what I was doing. There seemed to be a fog in my brain. My nerves were fragile. This was the beginning of my understanding about the “relapse” factor of CFS. If I strained or “pushed” myself my condition got worse the next day. If I pushed myself one day when I was feeling slightly more energetic than the day before I had to “pay” for that exertion over the next weeks as my energy diminished and my conditioned worsened. It might be three weeks or a month later that I might return to that original day of slightly higher energy. The nighttime experience of CFS was also physically and psychologically torturous. On the best of nights I would sleep lightly, getting up barely feeling rested at all. Most of the nights however were punctuated by night sweats. I would sleep no more than two hours and wake up soaked in sweat. I would have to change clothes and sheets in order to get another 2 hours of sleep and do the same thing over again. Most nights I would have to lay out 3 to 4 sets of night clothes and towels to sleep in for one night. Then on top of the very low energy levels, the poor concentration, the frail nervous system, the “relapse” roller coaster and the night sweats there was the digestive problems. Most of what I considered normal foods made me feel worse within an hour after eaten. Almost three years after first contracting CFS I got lucky. I found a book written and published in the UK that was written by a man who had the identical symptoms I had. He had taken it upon himself to find a cure, not just for himself but for others as well. The book was mostly about the failures of different treatments to work but he found something that was so immediately curative that he began to write this book before he had even finished the newly discovered treatment. This man introduced me to the miracle of The Gerson Therapy and recommended it to every CFS sufferer after he had done extensive medical research on its premises and found them sound. I immediately contacted the Gerson Therapy foundation located in San Diego California and started to personally investigate their literature and the medical claims it made. After buying and reading three college level texts on human and molecular biology I was convinced that The Gerson Therapy could work. I saved up money and began the Gerson Therapy in April of 2003. Nine months later I was not only fully cured of CFS but I was restored to the vigorous health I had experienced in my young twenties. Ten years later I can say without exaggeration that my health continues to astonish me. I am still healthier than I ever dreamed possible. The Gerson Therapy not only cured me of CFS but opened up a whole new level of physical and psychological health that I didn’t know existed prior. I only want to share the joy and appreciation of good health that developed in my life after being healed of CFS. Please contact me directly if you have any questions or doubts: prk699@yahoo.com Blessings and Health to You! Kilaya

thanx sue. i take 10 mg propanol in the am and always stay in bed until it takes effect and 5 mg in the pm. i take half in the pm because it seemed to keep me from sleeping. i am curious about using the long acting and wonder when dr rowe began prescribing such high doses. very interesting and i appreciate your time and effort.

I am lucky - I'm not one of those with ME/CFS who over-reacts to small doses of medications, so I can normally tolerate normal doses. In fact, I tend to metabolize drugs very quickly so sometimes I need more than most people.

Just to clarify, Dr. Rowe is not my doctor - he only takes on pediatric patients, though we and our doctors have relied on him for years for advice.

60 mg is not actually a high dose for the 24-hour extended release type of propranolol - it is the lowest dose. You have to consider that that amount has to last for a full 24 hours, so spread over that much time, it's actually not very much - about the same as what I was taking before for about 14 hours.

Interesting that it disrupts your sleep - Dr. Rowe advises taking the 24-hour types before bed because he says that some of our night-time waking and light sleep is due to random bouts of tachycardia while we sleep, so many CFS patients feel they sleep better while on beta blockers. I haven't noticed a difference with my sleep, though.

I have had Chronic Fatigue Syndrome (CFS or CFIDS) since March 2002. My 19-year old and 16-year old sons also have CFS, and my older son also has Lyme disease plus two other tick infections. This blog is about how our family is learning to live with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.